Why NICU Awareness month is important to me!

September is NICU awareness month, this is where we acknowledge the parents of children that have been in NICU and the amazing staff that work in the NICU. I am a mom of two children that were born early and had to go to NICU and then High care before they could come home to me. Both experiences have changed me and made me realize that NICU parents need that little bit of extra help and support. If you are a NICU mom, you need to realise that you did not have the “perfect” birth story that you dreamed of and to then make peace with how your unique birth story unfolded.

My first birth was an absolute horror story that still at times, can knock my confidence and belief that I am a good mother. It is my horror story filled with fear, confusion, love, worry and relief that my baby came home. This is the story of my firstborn.

I was on holiday and stated to retain a lot of water, which I thought was “normal” but then my urine changed colour and I was not feeling so well anymore. We came home a day early and I slept the entire trip, which is unlike me. Have you ever tried to sleep in a landrover? It is almost impossible with the bouncing around but somehow, I slept as if the world had faded away.  I felt like there was something wrong, but I had been checked the week before by my gynae and had been given the all-clear.

I was only 33 weeks pregnant and needed the holiday before we finalized all the baby things we needed to do. I did not think anything major was wrong, I was in denial, but something told me I should just check. As soon as we got home, I phoned my mom to take me to the hospital, something was just not right. I left my husband to unpack the car I just wanted to make sure still not believing fully that something was wrong.

The nursing staff at the maternity ward were not happy to see me, they did not really want to do a urine test, but something in me insisted. Out of protest, they phoned my Dr to let him know that he had a “difficult” patient. I was feeling unsure and very unwelcome at this point. My doctor took me seriously. He asked them to do full blood work-up because I had been near the Kruger park and he was worried that I may have got Malaria.

Malaria is a serious complication for a pregnant woman. I remember waiting for my results in the coffee shop and saying to my mom: “That I really hoped that something was wrong with me otherwise it was all in my head”. As it turned out, my blood results told a very scary story.  I was very sick, in fact, I needed to deliver my baby asap, not because of malaria but I had HELLP syndrome. 

HELLP syndrome is a life-threatening pregnancy complication usually considered to be a variant of preeclampsia. Both conditions usually occur during the later stages of pregnancy, or sometimes after childbirth. 

There was just no time, I could not bath, my father was called and no one told me how serious my condition was. My parents and husband knew that they would most likely not see me again but the baby would live. As a parent now, I can’t imagine how that must have felt like seeing your daughter going into surgery and not knowing.

Anyway, fast forward to 2 hours later I was in a recovery room totally confused not remembering what had happened. I will never forget waking up, my husband’s and paeds faces were right in front of me. The Paed said you have a healthy baby boy and I responded “What baby, why do I have a baby?”.

I was all of a sudden, a mom of a 33 weeker, 1.76kg little boy. It was too soon. My husband was ecstatic, and I was numb. I was so worried for my son, the one that I had not seen yet and the pain was unbearable. My emotions and understanding of what had happened were not at all computing. I went to ICU and there I stayed. I wanted to breastfeed, NO I NEEDED to breastfeed, I wanted to help my boy as much as I could even though I was so far away from him. My husband helped me to hand express. I was too weak to do it by my self but I knew how to and taught him how to. There is no real privacy in ICU, just a flimsy curtain that protects your dignity from one side but the rest is all open.

With pride and after much effort we sent a tiny syringe with about 2ml of breastmilk down to NICU for my son. I was so proud of my “love letter” going to my boy – the one that I had not seen yet. I got a message from my paed that he was so happy to get breast milk that I started to hand express again and the stress about making enough breast milk became real.

The worry about having enough milk is a feeling that never left me while my son was in the hospital. I remember one ICU Doctor not caring that I was pumping and insisted on doing an examination while I was expressing, causing me to spill all the milk I had just expressed. You need to pause here and understand how devastating that was for me. It was, at that point, the only connection, the only mothering, I was able to provide to my baby. And it was spilt as if it meant nothing. What a waste.

I just wanted to get out of ICU. I don’t remember the first time that I saw my son, but I do remember that he did not look like my boy. There was a big disconnect, you need to understand that I was not awake when he was born. I remember once I had been sent home and was visiting him, he made a specific movement: his little arm swept above his head while simultaneously kicking the opposite leg. When I saw him do that, I KNEW he was MY SON. He had made the same movement inside of me. Finally, I had my connection to my boy.

He was only in the hospital for 3 weeks but they were the longest 3 weeks I have lived through. I was lonely at home and longed for him when we were apart. I was torn because I knew he was in the best place for him and that he was receiving the best care, but it did not stop me from disliking being in the NICU. I felt so unempowered, I felt like I was in the way, I was not able to hold him to touch him and I was constantly trying to make more milk. One of the nurses even told me in front of everyone in the ward that I don’t have enough milk. I was devastated because I had 7 bottles of frozen milk in the NICU freezer at the time.

Our beginning was a tough one, we had lots to learn and I think I battled for a long time with the shock of almost dying: what it would have meant to my son and husband and then learning about the needs of a prem baby. Now, we still, like with all children have our own struggles, but he is so worth it. He has taught me so much about myself, about others and how to show love. The other day he said to me; “You know mom you are the best mom I could have had” and you know what, I believe him because he is the best son I could have ever had.

Some days I don’t remember his birth as being as scary and lonely as I have written here, I remember the better parts. But I decided to write about my “scared” emotions on this post because I have realized that moms don’t talk about how they really feel. I would like to encourage any mom that if they are feeling overwhelmed that they talk about it. NICU can be a scary place and no parent is ever prepared for what they see and hear or how they feel when they have a child in NICU.

I also know of parents that have completely different experiences in NICU, that they were comforted and felt welcome in NICU. I think that it depends on how you respond to your child’s birth and the support that you receive from health care professionals, family and friends. If you are a parent that has experience having a child in NICU, this month is all about hearing your story and acknowledging your journey.

• Registered Dietitian
• M(Msc)
• Certified Lactation consultant
• I became a dietitian because of my interest in breastfeeding and nutrition. However, only when I had my two children both prematurely did, I realise how much help and support mother’s needs. No textbook can prepare you for NICU. My breastfeeding experience with my children is why I became a lactation consultant. I now help mothers in their homes with breastfeeding issues. Another of my dreams was to establish My Breastpump. My Breastpump was created to supply mothers with affordable, quality, hygienic and comfortable breast pumps. This desire came from my struggles in finding a breast pump that worked for me. While overseas I learnt about the Ameda brand of breast pumps which is internationally recognised as a leading breast pump in technology and focus on mothers. My Breastpump hires out closed system hospital-grade pumps and supplies personal pumps and accessories. To learn more about My Breastpump go to www.mybreastpump.co.za

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